Hey all, long time lurker, first time posting.
Anyway, I got my jpouch in March of last year, so I've had it for exactly a year and I've been struggling with it badly recently.
I've had pouchitis a few times and was on Flagyl for almost 4 months. When I stopped the Flagyl about 3 weeks ago, I was doing pretty good: Only going 4-8 times a day, no weird pressures or urges to empty, spasms were low - I generally felt pretty good and was happy to be off the anti-biotics and I started exercising.
First, medicine I'm taken
-100mg daily amitriptyline for pouch spasms.
-Probiotic 1 daily VSL#3
But for the past few days I have been so miserable. Starting Sunday I've been having these symptoms.
- Forced to empty pouch every 1-2 hours
- Forced to go after eating anything, bad spasms
- Pushing hard to go
- Stool consistency is runny not as formed when feeling good (despite eating bananas, oatmeal, apples for fiber)
- Immense burning when emptying (Trying the bile salt powder use to work, now it's not)
- Swollen/inflamed anus/anal area, particularly on the left side, making it very painful to empty
- Never feeling empty
I called my Gastro and she said since she pouch-scoped me last month and everything looked healthy and pretty great (she said I have one of the best pouches she's seen), that she has no idea what's causing this. I have no energy, I'm eating less, and feeling dehydrated because of these symptoms. I pleaded with her to see me, but she said it won't make a difference. I'm about to head to the ER, I'm in so much discomfort.
Getting a "I don't know" from the doctor is very disheartening. I know what it feels like to have a healthy pouch. This is not it.
The only thing she said we could try was to change my amitriptyline to a different anti-spasmodial. I don't think this will help, spasms/nerves don't explain the inflammation and swollen feeling.
So please, anyone that has had similar symptoms or can refer me to a doctor within or near the St. Louis area? I don't even know where to go. I've called a few doctors, but all of them have 1-2 month waits for new patients. I've barely made it 3 days. I'm just physically exhausted after a bowel movement.
Anyway, I got my jpouch in March of last year, so I've had it for exactly a year and I've been struggling with it badly recently.
I've had pouchitis a few times and was on Flagyl for almost 4 months. When I stopped the Flagyl about 3 weeks ago, I was doing pretty good: Only going 4-8 times a day, no weird pressures or urges to empty, spasms were low - I generally felt pretty good and was happy to be off the anti-biotics and I started exercising.
First, medicine I'm taken
-100mg daily amitriptyline for pouch spasms.
-Probiotic 1 daily VSL#3
But for the past few days I have been so miserable. Starting Sunday I've been having these symptoms.
- Forced to empty pouch every 1-2 hours
- Forced to go after eating anything, bad spasms
- Pushing hard to go
- Stool consistency is runny not as formed when feeling good (despite eating bananas, oatmeal, apples for fiber)
- Immense burning when emptying (Trying the bile salt powder use to work, now it's not)
- Swollen/inflamed anus/anal area, particularly on the left side, making it very painful to empty
- Never feeling empty
I called my Gastro and she said since she pouch-scoped me last month and everything looked healthy and pretty great (she said I have one of the best pouches she's seen), that she has no idea what's causing this. I have no energy, I'm eating less, and feeling dehydrated because of these symptoms. I pleaded with her to see me, but she said it won't make a difference. I'm about to head to the ER, I'm in so much discomfort.
Getting a "I don't know" from the doctor is very disheartening. I know what it feels like to have a healthy pouch. This is not it.
The only thing she said we could try was to change my amitriptyline to a different anti-spasmodial. I don't think this will help, spasms/nerves don't explain the inflammation and swollen feeling.
So please, anyone that has had similar symptoms or can refer me to a doctor within or near the St. Louis area? I don't even know where to go. I've called a few doctors, but all of them have 1-2 month waits for new patients. I've barely made it 3 days. I'm just physically exhausted after a bowel movement.
